A Letter to Fellow Hodgkin Lymphoma Caregivers

My name is Natalie Gore Casey. My husband, James, was diagnosed with Hodgkin lymphoma less than a year into our marriage. At the time, I was three months pregnant.

It felt like our world came crashing down.

At 36 years old, my husband was about to undergo six months of chemotherapy with an extremely emotional pregnant caregiver. Then he’d start radiation treatment at the same time we had a newborn. We were in survival mode.

I learned very quickly that the best thing I could do for my husband was to be there with him. Quite frankly, it was one of the few things that I felt I could do well. Each week marked another round of chemotherapy or blood work, and brought us another week closer to the birth of our daughter.

Most days, we took everything moment by moment. For us, we had to focus on the here and now and just pray that the rest would fall into place.

James was neutropenic (meaning his immune system was incredibly vulnerable) during his entire six months of treatment. Our main priority was to prevent any infection and keep him on schedule. We did everything in our power to make sure he didn’t get sick. Period.

I opened doors for him and wiped down everything I could before he touched it. He almost never went out in public. He worked from home ,and I carried hand sanitizer everywhere to make sure I didn’t bring any germs home with me. I even went so far as to come home from work, change clothes, and shower before talking to him.

There was also a strict “no touching” policy from anyone outside our family. If you were sick, you were lovingly told to stay away. It may sound rude, but this was critical in his treatment process. James never got sick once and didn’t have any delay in treatments or spend any time in the hospital.

The biggest thing that helped me as a caregiver was to get permission from my husband to not be OK sometimes. I would put on my game face two weeks at a time. Then the night before chemotherapy, I would fall apart. My husband would tell me that everything was going to be okay, and then we’d wake up the next morning, walk slowly but steadily (hobble in my case) into the infusion rooms, and start all over again.

We relied on each other fully, as well as on our family and friends.

My husband finished his last round of chemotherapy eight days before our daughter was born. Through the sleep deprivation of the newborn phase, he went to radiation treatments. And in April 2017, he completed all treatment and was declared “cancer-free”!

Not a day goes by that I’m not reminded about cancer, but there are moments when I forget about it completely. My husband is healthy and strong. Sometimes when I see him with our daughter, it takes my breath away at how beautiful our life is now. Does the fear of a recurrence still try to get the best of me? Yes. Do I get nervous before every PET scan? Yes. But with every single day that passes, we find ourselves coming out of the fire.

I want you to know that you can get through this, and it’s OK to not be OK sometimes. You and your loved ones will never be the same, but you will never take each other for granted. Ever. Listen to your loved ones and be their voice when needed. You’re their biggest advocate.

Remember that you’re not in this alone. It’s possible to put one foot in front of the other until you find yourself and your loved one so far out of the trenches that you will look at each other one day and go: “I can’t believe that really happened.”

Love,

Natalie

Natalie Gore Casey is a musician and videographer from North Texas. Her husband, James, was diagnosed with Hodgkin lymphoma at the same time Natalie found out she was pregnant. She documented their journey through cancer and pregnancy on her and is happy to announce that he is cancer-free as of April 2017. Their daughter, Lyla James, was born in February 2017 and is the light of their lives!